Several years ago, after a bad bout of the flu, I woke up to find that my knuckles ached for no apparent reason. In a couple of weeks, so did my ankles and toes. Before long, my knees and elbows had joined in, and the pain kept me up at night. My consultation with Dr. Google suggested that this was not good news, and when I finally got in to see a rheumatologist, she agreed: I was diagnosed with rheumatoid arthritis, an autoimmune disease in which your immune system mistakenly attacks the lining of your own joints instead of an infectious pathogen.

It’s estimated that a whopping 50 million Americans have an autoimmune disease. Three-quarters of them are women and, like me, they often develop them in the prime of their lives. I discovered that I’d been incredibly lucky to get a diagnosis within several months. Thanks to that early treatment, my RA was quickly put in remission and I’ve been healthy for years. But according to the American Autoimmune Related Diseases Association, patients with autoimmune diseases see an average of four doctors over four years before they receive the correct diagnosis, and nearly half report being labeled “chronic complainers” during their search.

MP Speaks Of “One Of The Biggest Medical Scandals Of The 21st Century”

Calling On All York Businesses !

Would you like to help your local community ?

By current research, there are around 800 people in the York area suffering from Myalgic Encephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads who hasn't turned up for five-a-side for a while.

There's information at the top of this site to explain how it affects people and ruins lives. These are your neighbours; would you like to help ? To read the rest of this request, click on the link below:

The Nomadic Knights Reach Everest Base Camp For ME Awareness !

After a pretty tough time, the guys riding as part of The Nomadic Knights group, made it to Everest Base Camp. I hope we can use this story to gain interest from media sources to help raise awareness for us all. It's the least the guys deserve for all their efforts.

19 May 2017.

“Very pleased to report that we reached Mt Qomolangma (Everest) Base Camp with the ME Awareness Flag at 1528hrs on Thursday 18th May. Three and a half hours after we had planned but time in Tibet can sometimes be very fluid. The base camp is located at 5200m, walking to the final destination was challenging in itself due to low oxygen levels.

Conditions at base camp were extremely windy (good for flag flying) with intermittent clouds with no particular destination in mind and the sun was not ideal for photos."

Symptoms Of ME – (Myalgic Encephalomyelitis)

What’s Meant By ‘Invisible Illness’ ?

Wheelchair Friendly Walks In The Outdoor Guide

Debbie North, our TOG wheelchair walk designer uses an off-road mobility scooter, also called an all terrain hopper to access the countryside and wants to inspire other wheelchair users to do the same through her wheel friendly walks.

Wheelchair friendly walks are a selection of walks that the TOG team have carefully selected for families using pushchairs, wheelchairs or bicycles.

The Jen Brea ME Film ‘Unrest’ Now Available On Amazon And iTunes !

The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) was shown to a sellout audience at City Screen York on 1st November, prompting a second showing on 16 November. This film has won awards at The Sundance Film Festival and is a must see for all wishing and needing to know more about an illness affecting over 800 people in the York area alone.

Although still showing around the UK and worldwide, it's now also available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site to save having to undertake a journey to the cinema.,

Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank you.

CFS and ME Comparison Chart

One of the major questions raised is the blending of ME with CFS. This chart on the Hummingbirds site illustrates the many differences between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME).

Citizens Advice York

The Broken Puppet Theatre Company

Welcome to Broken Puppet Theatre Company.

We are a small team of creative professionals who live with chronic illness and invisible disabilities. We work with theatre, film and puppetry to support children, families, schools and communities who are learning to share their world with chronic illness and invisible disabilities too. Our aim is to provide creative expression and escapism wherever they are needed.

"Everything Broken has a Story..."

Helpfulpeeps….People Looking To Help You….Or Looking For Help…

Helpfulpeeps is a platform that allows people in any given area to ask for and offer help to one another. Although this is a nationwide facility, by adding your street name, the system automatically drops a pin on that location and you only see posts from a 20 mile radius. You have the option to narrow or widen this radius. I hope this is a useful facility for members of our Community.

Fire Safety In The Home

Upon request, North Yorkshire Fire & Rescue Service can carry out a home fire safety visit to your home, completely free of charge. This visit involves fire service staff coming to your home to give you advice on fire safety in the home, actions you can take to reduce the risk of fire, and discuss escape routes should fire occur.

If you don't aim to take up this offer, please at least check the batteries on your smoke alarms on a regular basis. If you want to read more, click on the link below:

Remembrance Isn’t Just For November – It’s For Every Day Of The Year – We Will Remember Them

Twitter News

City Of York Council Meets Up With The York ME Community To Talk All Things ME Awareness !

I had a very productive meeting with Cllr Aspden and Cllr Runciman of City of York Council where they have stated they will back efforts to raise awareness of ME, understanding that much more is needed to increase understanding of this debilitating disorder, in York and across the UK.

UPDATE: A motion is to be put before Council on 22 March with regard to support in raising ME Awareness in York. Hopefully I will be speaking to the council to support the motion.

Calling All York Sports And Fitness Clubs, We Need Your Help !

Are you a member of a York based Sports or Fitness Club ? Looking for a local cause to run or do an activity for ? The York ME Community are looking to be 'adopted' by anyone willing to maybe run for us and help raise our profile. There are around 800 people of all ages in the York area who would be so very grateful for your help.

The York ME TGA Shield – Inter Company Fantasy Football League

Calling all York Businesses, Clubs and Venues, sign up now for the new Fantasy Football season and support your local ME Community !

Bransby Wilson Parking Solutions are trying hard to defend their title this season, but NG Plumbing and Heating are looking favourites to steal their crown !

The second season is nearing the closing stages with 15 teams involved ! With the aim of raising ME Awareness, we have also raised over £400.00 for Invest in ME Research.

NG Plumbing and Heating topped the league on Christmas Day and so received a special prize from another of our sponsors, Nestle of York. Well done guys !

We’ve Been Raising ME Awareness At York Explore Library !

We had a brilliant day at York Explore Library raising ME Awareness. Lots of interest in what we're doing from local health groups, charities, the council and most heart warmingly, from those dealing with ME themselves who now know we're here for them.

If you'd like to hear more about ME, get in touch.

Why Not Come Along To The York ME Community Coffee Club This Month ?

Our Coffee Club meets twice a month for a cuppa and a natter.

Dates and times will always be shown in our diary at the top left of this site.

The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand.

Due to the nature of the illness, there will be times when numbers are low, but if you'd like to attend, either just turn up on the day, or email me at bill@York-ME-Community.org. If you're a member of our Facebook Group, you can of course say you'll be going via the notice in the Events area.

Featured Article On The ME Story By Nathalie Wright Of The Independent

Time For Unrest: Why Patients With ME Are Demanding Justice.

If you want the full story on ME and will read just one article about it this year, please make it this one,

Carers And Disability Benefits Guide

DisabledGo In York

DisabledGo in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Public Toilets in our city. To find out more before setting off for York, click on the link below:

Get The Right Care, First Time This Winter

By The Way, The York ME Community Can Also Be Found On Facebook !

The social element of this site is via a Facebook Group called The York ME Community.

This is available to people in the York area looking for help, advice and support, whether those diagnosed, family or friends. We are a close knit group who discuss more than just ME, as we like to think that we are not defined by this illness. We discuss every day things, have a laugh, and try to meet via our Coffee Club if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as there are a couple of automated questions to be answered before being welcomed to the group.

Please don't apply to join if you are promoting your preferred remedy. I'm happy to mention your company within the group, but it's for individuals to choose what they wish to try in their battle to seek an improvement in their health.

13th Invest In ME Research International ME Conference – 1st June 2018

This annual international CPD accredited research conference at One Great George Street, London provides a platform for the latest and most promising biomedical research into ME, and will be attended by researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups from twenty countries around the world and is open to all.

Sally Duffin

FEATURED ARTICLE

By

Sally Duffin

Hello to all the members of York ME Community. I’m Sally, a Naturopathic Nutritional Therapist at ‘Nutrition in York’ and Bill has asked me to share some nutritional therapy approaches for managing ME.

Many nutritional therapists – myself included – are trained in the Functional Medicine approach to healthcare which means we are less concerned with the name of a condition (ME, CFS etc.) and more interested in the underlying cause and contributing factors of the condition. (more…)